Tag Archives: Facebook

Dear Universe, I’m listening…

Posted in Just Life., Multiple Sclerosis by

Accosted at Costco

Last night, after a day of feeling terribad, I managed to drag myself out of the house and go to Costco with Adam and Henry to pick up some needed supplies and eat cheap pizza.

For the first time in years, an older, overweight, white gentleman looked at me with anger in his eyes, and said, as we were walking to the store, “WOW! Which one of you is handicapped?”

I didn’t miss a beat. Rather than being rude, I locked eyes with him and said, “Me!  Epilepsy and multiple sclerosis. Thanks!” And under my breath, I muttered, “You fuckin’ asshole.” Part of me wanted to answer, “None of your fuckin’ business, douchebag!” but honesty meant that he had the opportunity to understand both that he’s wrong for asking, and that I am not ashamed of my disability.

I spent at least the next 30 minutes trying to figure out why I was so furious, and why I couldn’t calm down. Was it because someone thought that they should be policing my body? Was it because I didn’t look disabled enough for someone to show basic compassion? Nah. I’m actually proud that I’ve done enough exercise to be able to walk well. But I finally figured it out…

I was pissed because every time a stranger calls me out over my parking space, what they’re really doing is publicly impugning my honor and my husband’s honor, since he’s the one who drives.  They’re suggesting, loudly, that we are liars — that I’m not really disabled, and that I don’t deserve the space.  And dear LORD, I wish that were the case.

Yesterday, I was actually feeling so badly that I almost didn’t go to the store. I hadn’t bathed in a couple of days (I don’t shower when I’m feeling shitty for fear of falling, and I need Adam at home with me in case of that.), so I put on extra deodorant and a baseball hat to cover my greasy hair. I was wearing pajama leggings and one of Adam’s old t-shirts with no bra — because yesterday, bras hurt too much to wear.  My arms were stinging, my legs were heavy, and I’d been battling stomach issues since I woke up.  But, apparently, I didn’t look disabled. I just looked like a slob. (Ha! Both can be true.) I dared to go to the store anyway, because I know how important it is to get up and move, even if it’s just a little bit of walking… and I had to get the fuck out of my house. Stir-crazy is no good. I don’t regret it.

looksick

Atonement

Yesterday also happened to be Yom Kippur — the holiest holy day of the year for Jewish people. So, technically, I shouldn’t have been going to the store at sundown anyway… but my faith is anything but traditional.

Before getting in the car, I told Adam that I felt like the self-flagellation practice of the holiday didn’t make a lot of sense for me anyway. I could tell you (or G-d), without blinking an eye, everything that I think is wrong with me, and apologize for it any day of the week — but I have a lot harder time finding the things about me that I should celebrate and thank the Almighty for. If I need to atone for anything, my strong suspicion is that I need to atone for not recognizing or using my gifts to their utmost.

The whole point of Rosh Hashanah and Yom Kippur, and the Days of Awe in between, at least as far as I have groked, is to take stock of where you are in life, get right with yourself and everyone else, and start a new lap around the sun with a better attitude about life and renewed determination to be the best version of “you” you can be.

So, I didn’t just take the stranger’s provocation just at face value. I also felt a nudge from the Universe, reminding me to write here.

I actually started this blog after the first time someone accosted me for parking in an handicapped space. That was back when I could still drive.  I like to joke that I’m just in it for the parking because it’s a better attitude to have towards my disability than to sit, mired in self-pity.  Gratitude wins every time. So, here’s my prayer of thanks, patterned off of memories of temple services long-since attended.

If I must be disabled by seizure disorder and MS,

  • At least it makes parking easier.
  • At least it means I get SSDI and guaranteed medical insurance.
  • At least it means that I get to spend time with my son instead of having to send him to daycare while my labor generates wealth for others.
  • At least it means that I get the chance to individually tutor my son so that he can learn at his own pace.
  • At least it means that I get the chance to explore a side of femininity I would otherwise have entirely ignored due to internalized misogyny, and attempt to be a good housewife.
  • At least it gives me the time to check in on the people I love and offer them support.
  • At least it gives me the opportunity to participate in online support communities and help strangers who are suffering, on a daily basis.
  • At least it consistently helps me grow with regard to empathy and determination.
  • At least it challenges me to find ways of being that honor my past and build possibility for the future.
  • At least it helps the people who care about me grow in their understanding of our shared humanity.
  • At least it gives me the chance to write and be creative, and in doing so, to honor this experience and connect with others.

yomkippur

There’s Never Been A Better Time To Have MS

So, there’s never a great time to have MS, but really, really, it’s been as great a week to have multiple sclerosis as there can be.  There’s been a ton of research that’s come out with regard to the cause(s) and mechanisms by which the disease actually works.  This gives me a ton of hope for the future.

Here are some important news stories that have dropped in the last week.

ms-nerve-cells

Starting Fresh

And in the spirit of being the best “me” that I can be, I’ve decided to massively decrease the amount of support that I give to Facebook by providing content. The news came out in the last week that they’ve decided to allow advertisers to lie, and that content that would get users banned will not be considered ban-worthy if it’s coming from politicians.  I think that’s outright foul. FB isn’t just facilitating defamation, they’re supporting it.

So, I’m taking my community-curating, constantly-posting-content self to MeWe.  I’d love to see you there.

facebook-mewe

And one last thing…

Apparently, it’s also World Mental Health Day.  I still suffer from depression, anxiety, and PTSD. I am have worked in therapy for years to feel better, and I am not ashamed. If you are struggling, please reach out. There are good people out there who want to help you. I’m one of them.

I’m alright.

Posted in Just Life., Keto Diet, Multiple Sclerosis by

As of today, it’s been 2 weeks since I last logged in to either Facebook or Twitter. I got my first, “Are you okay? People are worried about you.” text the day before yesterday.

I was both surprised (a) that anybody was worried (because Depression would have me believe that nobody cares) and (b) that it took 12 days for anybody to miss me enough to check in. (Though, to be fair, I’ve been checking in with a lot of people and making the first move because I recognize my responsibility to maintain relationships that are important to me.)

I had hoped that by posting here about my decision to step away from social media that it would have helped folks to not worry.  And then I found out that WordPress no longer publishes blog updates to personal timelines.  It only works if it’s attached to a Page and not to a personal account.  Adam thinks I should just create a Page for this blog. He’s probably right.

But, if I’m going to put in the work to do that, may as well put in the work to revamp the site and market it to increase readership… to start daily posting again, and hope that by leaving footprints on the path that I walk, that it does anything helpful and good for anyone else.

Thinking about it makes it feel like a lot more work than it is… It also would require me to log in to FB and Twitter and weed my digital garden to curate a better newsfeed experience. Right now, I’m not sure whether or not I have the time or energy for all that. I’ve just started to not automatically reach for my phone every few seconds.

Banality

To be really frank, I’ve dived deep into housewifery and stay-at-home mom-ness in the last few weeks. I’ve been focused on my family’s health and giving Henry the educational and emotional support he needs to grow up smart, kind, strong, and self-assured.

Sure, my house always seems to me to be in dire need of a maid, no matter how often I pick up (an act that feels constant and on-going), but life is happening here in full force. Loads of creativity through messy art projects and loud, often-dissonant, impromptu music sessions. Lots of science and math through baking and cooking and LEGO and video games.

As someone who used to live her life almost strictly for the stories (Cheers to you for being entertaining, 2004-2006 Past Rae), I find myself having a tough time feeling like I have much to gab about on my public, digital diary.

There’s not much excitement to be found in the daily, constant cycle of dishes and laundry, in religiously coupon-ing with multiple apps [Ibotta, Jewel’s app, Fetch Rewards (Use my referral code, 73962, during signup and you’ll get 2,000 Fetch Points just for starting.), & Coupons.com], meal planning around the weekly promotions at the 3 different grocery stores in walking distance to my house, and, oh yeah, managing my health.

The one remotely interesting thing that I’m doing right now is volunteering with Detention Lifeline, and writing legal briefs is only interesting to me because of the kind of nerd that I am. Truthfully, I’m just grateful that my legal knowledge might help, well, anyone at all.

Back on the Keto Bandwagon

One of the biggest changes of the last few months for me was stopping the keto diet and returning to the standard American diet (SAD for short) while trying to conceive because my high-risk OB wanted me to just do exactly what we did to end up with Henry. (The idea being that since Henry’s pregnancy was uncomplicated and he’s healthier than any of us, I had it right the last time around.)

Well, my 38 year old body isn’t my 33 year old body, and pain and seizures from unnecessary inflammation caused by diet does not make for optimal sexytime.  There’s an order of operations here that just cannot be ignored.

So, I gave the SAD 3 months. I gained 10 pounds and started genuinely struggling with MS, seizures, and depression again. Come to think of it, if it weren’t for the switch in diet, I probably wouldn’t have had the time-travel seizure that created the desire to quit social media. So, yeah. That’s enough of that nonsense.

Do I think I’m going to keep keto throughout my pregnancy?  Definitely not. I want to make sure a developing child has everything it could possibly need while inside me. And morning sickness absolutely begs for carbs. But fertility specialists recommend the ketogenic diet for both men and women who are trying to conceive — and that’s where we’re at. Plus, it helps with MS – both with managing symptoms and with slowing progression. I’m already supplementing with a prenatal vitamin with extra DHA and also take additional folate, so hopefully, everything will work out the way it needs to.

After having a spontaneous miscarriage in August of 2017 and having to end a pregnancy in late November of 2018 due to genetic abnormality, I’m really, really hoping that the 3rd time is the charm. I’ll do whatever needs to be done to help Baby Majka #2 to join our family. We all already feel their absence, and it sucks.

But it is nice to be able to sleep through the night, so I’m not taking that for granted for even a moment.

In that vein of thought, I’m going to get to work on a brief for a guy who is detained in one of our our many American concentration camps, so that he will eventually get to have some good sleep too.

Not Alone.

Posted in Just Life. by

“You’ve always been addicted to the internet.”

Those were the words that my brother spoke yesterday when we talked on the phone. And he’s right. I was actually addicted to social media before the world wide web was a thing. Back in the early 1990’s, I started getting on bulletin board systems (BBS for short) in an effort to connect with people during the times that I spent at home alone. I’m pretty sure that I was 11 years old and in 7th grade the first time that I dialed in.

“If you’re on the computer with other people, you’re not alone.” was my response. We chuckled about it and moved on with our conversation.

But it got me to thinking. Even when I went away to summer orchestral band camp in 10th and 11th grades, I spent a good amount of my free time (when I was not practicing percussion) in the library at Sewanee, telnetting in to Shadowscape in the hopes of saying hi to friends. I spent time when I could have been connecting with new friends, or growing as a person, desperately trying to stay in touch with old ones so that I wouldn’t be out of the loop when I got back.

The same was true for me in college. Using the BBSes to stave off loneliness was such a real thing for me that I continued to do it once I started at Berklee. With the advent of AOL Instant Messenger, I lost the big conversations that happened in teleconference, but I got closer to many people through individual chats.

I used my computer for friendship so often that my first set of roommates kicked me out for typing too loudly, late at night. My second-semester roommate also noticed how glued-to-the-screen that I was, as I chose not to try to find parties or hang out with other students and instead waited, often for hours, for my long-distance boyfriend to log on to say hi.

I transferred to USC my sophomore year of college, and tried in vain to rush a sorority and make friends in real life. My roommate was a total cunt who went out of her way to hurt me. And I met my first husband, who was similarly attached to his computer, though his addiction was video gaming.

I realized that USC wasn’t the place for me, and I went back to Berklee… but I didn’t have the self-confidence necessary to break up with that guy, so, even though I had my own apartment in Boston, I didn’t go out exploring. I didn’t go to parties in a city where there are more college students than regular citizens. I stayed in, waiting for him to log on to See-You-See-Me or AIM. And on the rare occasion when I did choose to leave the apartment or have friends over, he accused me of cheating on him (which is kind of hilarious in retrospect, since he went to parties at USC and admitted to cheating on me.)

After he moved to Boston, I will admit, my obsession moved from social media to him and business planning. I was convinced that if I wrote the business plan for AudioXtacy well enough, that I’d be able to get venture capital, and could help change the landscape of the music industry. Oh, the hubris!

In late 2002, one of my friends from the BBSes introduced me to Live Journal, and a new obsession was born. Not only could I keep up with my friends from the BBSes who were busy writing about their thoughts, feelings, hopes, and dreams — but also friends from college who were trying to promote their bands and build their brands.

In 2005, after my divorce, I moved to Los Angeles for law school, and Live Journal is where I found my people. There was another girl from the BBSes who had moved to L.A., and our friend-overlap was huge, so she invited me to meet “the geeks” she was friends with in L.A. It was love at first type.

If there was ever a time in my life when I actually got out of my home and lived, it was during my first 2 years in Los Angeles. I was the Section A representative for the Student Bar Association. I felt what it was like to be well-known for something other than being the weird, brainy Jewish kid, and I liked it. I went to bars or parties at least 2 nights a week. I read up on human sexuality when I wasn’t reading case law. I worked out at least 2 hours a day, and was in better shape than I had ever been in my life. I got on OkCupid — another social network — which was responsible for my meeting and ultimately falling deeply in love with Adam (my current and forever husband), who ended up getting a job at MySpace.

And then, I was diagnosed with MS.

The diagnosis itself wasn’t what drove me back to social media overuse, though it is what caused me to start this blog. Truthfully, I never stopped reaching out online. I was still posting daily (sometimes multiple times per day) on Live Journal, always had AIM open on my system, and with Adam and our friend Gideon working at MySpace, I spent a truly stupid amount of time on that platform as well. Once Twitter and Facebook became things, I was on them, immediately. And often, to my detriment, in class. Hell, I even had a Friendster account at one point.

When seizure disorder struck, and I couldn’t make it to all my classes or safely go out with friends, Live Journal and Facebook were my only real windows to the outside world and the people I cared about. Then Live Journal got purchased by some Russians, and everyone just stopped blogging.

I spent a good 5 years couch-locked because of seizures. During that time, if I wasn’t preparing for the bar exam or doing the basic chores of life, I was on Facebook (or, for a hot second, Google+). That includes when we had to move to Romeoville because MS and 2 years of unemployment had basically bankrupted us, and the years we lived in Chicago-proper, before having Henry.

After Henry was born, Facebook became even more important to me because the message boards on TheBump were filled with angry, self-righteous bitches. I was so painfully lonely in that apartment, trying to figure out how to be a mom while dealing with MS, seizures, lack of transportation, and a horrible case of PPD.

And now, after studying how food affects me, I have fewer seizures than I have for the past decade. Most days, I can walk to the store or Gymboree with Henry easily. Most weeknights, I can make it to the gym. But I wasn’t fully living in meatspace.

Where did I look for healthy recipes? Facebook (and Pinterest). Where did I go for support and guidance with weight loss or suicide prevention or questions about motherhood? Facebook. Where did I do research into the best methods for homeschooling my son? Facebook. Where did I spend most of my time, when I should have been cleaning and connecting with my son? Facebook.

I was still looking online for companionship. I was still scrolling compulsively. I was still feeling innately lonely. Hell, even with my husband in the room, I still felt the need to constantly check in, and I didn’t realize how that may have been hurting him. (Sorry, babe.)

And when my PTSD went absolutely haywire a couple of days ago because of the combo of time-travel and a terrifying news cycle, I got angry when confronted with the fact that I quite literally couldn’t look away.

So, at the age of 38, I’m breaking a pattern that has served as an emotional crutch for 27 years — nearly two thirds of my life. It’s downright painful.

I feel like I’ve abandoned a ton of people who I deeply care about, even though I am actively reaching out to folks on the phone and over text. In the interest of personal growth and positive mental health, I’ve abdicated responsibility as an admin on more than 20 groups, without warning anyone, which feels really shitty, since I derived a sense of purpose from helping people in those groups. And to be frank, I feel like I’ve entirely cut myself off from society, since I still can’t drive anywhere, and all of the community’s social events are available to view there.

I feel like a failure at one of life’s most basic skills: just being okay being alone. And I have no idea how to make friends who aren’t the mothers of my son’s playground playmates anymore. That being said, I’m profoundly grateful for that small handful of mommies. They are real friends, and it’s because of them that I feel like I am up to this challenge.

I hear that making friends after your 20s is tough for most people anyway, and that fear of loneliness drives some of humanity’s most prolific and toxic behaviors, like substance abuse.

So, I guess, when it comes to needing to grow this skill, I’m really not alone.

Well, duh.

Posted in Just Life., Seizure Disorder by

You know, there are days when I realize that for however smart I was in grade school, that may well be how completely clueless I am as an adult about common sense things.

smart-vs-dumb

Gorgeous, either way, though, right?

See, I’ve been living in Orland Hills, IL for a little over a year now.  The town is so small that in order to use public transportation, you actually have to call a phone number more than 24 hours in advance and set up your ride.  It’s like paratransit, but for everybody.

When we moved here, I walked over to the town hall to get all of our paperwork in order, and I was told by some of the ladies who work there that I couldn’t bring my baby on the bus because they don’t allow car seats.  Thus began my year of walking everywhere and having absolutely crushing stir-craziness in the winter, wondering how I would make it until my son turned 8.

Well, today, I had enough of it.  It’s gorgeous outside (but -5 degrees wind chill), and despite having time travel seizures yesterday, I decided I was tired of feeling like a middle schooler who was impatiently waiting for one of her friends to get a drivers license. I decided to ask the hivemind — my friends on FB and the folks in one of the local parenting groups on there.

And do you know what they suggested? A taxi service.

benny

I’m not sure why it didn’t occur to me earlier, and I feel totally dumb for not thinking of it. It’s so simple and straightforward that it makes my head hurt.

For some reason, I thought that since we’re living in the suburbs, we wouldn’t have access to taxis out here… but we do! I even thought, “Hey! Uber might work!” but riding in an Uber with a baby and his car seat only works if the Uber driver is cool with it — and most of them aren’t. (Who can blame them? If my baby pukes, Uber’s not gonna clean it up for them, and if we are in an accident, the liability for them is too great.)

So, one of the ladies in the parenting group suggested a specific driver who works with her elderly mom, and I’m going to be giving him a call tomorrow.

I’m tired of feeling like less than an adult, simply because I can’t get where I want to go when I want to go. Henry deserves to go to the library, regularly. He deserves to go on playdates. He deserves a life outside of this house, and a mommy who has more self-esteem than I do right now.

Cabbing it might seem kinda costly, but I’m going to do everything I can to remind myself, when I’m feeling too cheap to give us freedom, that if I had a car, I’d be paying more for gas, maintenance, licensing, and insurance. Not to mention how much we’ll save on psychological therapy in the coming years for me and Henry. (No agoraphobia allowed!)

So, I’m now looking very forward to going to pilates or yoga classes during the day at our gym like I’ve wanted to for so long. I’m going to make friends here and be a functional member of this community. I’m going to stop using my inability to drive as a reason to feel sorry for myself. I’m taking back at least some of the freedom I’ve unconsciously given to seizure disorder.

On a completely different note, I was approached by an employee of Earnest a few weeks ago who asked me to write an entry on holiday budgeting. Over the course of our emails it appeared that they wanted me to suggest to my readers that they refinance their student loans. They didn’t offer me any compensation to promote them, so my link above exists out of nothing more than goodwill towards someone who may have read one of my entries, but who definitely has a tough job if they’re trying to get sporadic writers like me to pimp their product.

Anyway, I have a ton of tips that I would be happy to share about how I personally save money, but I also have a massive amount of respect for my small and dedicated group of readers. I don’t believe that y’all care one iota about reading about that sort of thing here.  If I’m wrong, let me know, and I’ll happily write it up for you.

Hope everyone’s feeling well, and that 2017 isn’t half the shitshow that the Great Dumpster Fire of 2016 was.

2016dumpsterfire

I’m so doofy, I forgot to title this post for several hours.

Posted in Just Life. by

Priorities.

I just finished reading a great article on “debugging” our brains. As I was reading it, I came across this gem: facebookforever

Every morning, I wake up, feed the dog, text my husband, and immediately check both my email and Facebook notifications. This sometimes leads me to forgetting to eat breakfast until nearly noon. All I could think was, “How does he know?!”  Rather quickly, I realized, “I’m not the only one.”

Fortunately, the article lead to me getting off the computer (for at least a few minutes) and eating breakfast. I quickly followed that up with starting this entry, lest I forget to blog today.

It’s a beautiful day outside today in Chicago, so if I don’t get dressed and walk around outside for a while, I know I’ll be sore with myself. For me, weather doesn’t get any better than mostly sunny and in the low 60s. Hoodie-optional weather. It’s the best.  Fortunately, I live very close to both Marshalls and a couple of decent grocery stores.  I think when I’m done with this, I’ll put up some laundry to wash, get dressed, and head out to enjoy the weather and go shopping.

Of course, it’ll be easier to finish this entry if I stop bouncing back and forth between writing this, checking a couple of message boards, and answering email… No! Right! NOW! 🙂

So, what are my priorities for today?

  1. Figure out what on earth to make for dinner, so I can get the ingredients while I’m out.
  2. Do laundry so we have clothes to wear.
  3. Maybe even fold some of it… (Ok, let’s be real. This one belongs dead last on the list.)
  4. Make an appointment for Brisco to get groomed.
  5. Unstack the dishwasher.
  6. Do as many of the dishes that are hanging out in the kitchen waiting to be cleaned as I can before I start feeling punk.
  7. Make the bed and refill the humidifier.
  8. Tidy the living room.
  9. Go to the gym or at least get Adam to go on a walk with you for a half hour at the park.

Any more than that, and I know I am setting myself up for failure… so let’s focus on the good to get my attitude moving in the right direction!

Edit – 2 or 3 hours after I initially posted: I didn’t make it out of the house before storm clouds invaded. I constantly forget that my body is in far more control of the outcome of my day than my intentions. I figured out dinner. Laundry is up, dishes are soaking, lunch is baking… and I’m calling that a win.

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3 Great Things About Yesterday

  1. Spent some quality time with the in-laws.
  2. Had brunch with some friends we haven’t seen in a long time who are always great to be around.
  3. I know it’s gonna sound cheesy as hell – but there was a moment yesterday when, out of nowhere, Adam came over to me and said, “You need snuggles.” and proceeded to cuddle with me. That was, without a doubt, the best moment of the entire day. I love that man.

What made YOUR Sunday special?
 

Daily Cute

Please ignore that this is a commercial. Without the branding, it’s adorable.

Everyday Earbug

I can’t even explain why I like this song and particular mix so much, but I really do.
 
monday

The Return of Daily Awesomeness.

Posted in Just Life. by

F*ck Facebook. Seriously.

Yesterday, I hit my limit with rage porn on Facebook, so I took 24 hours off.  I thought that would give me the opportunity to relax and stop getting so super angry with every annoying post that I saw.

Well, I was wrong.  Time did not help.  When I logged back in this morning, I saw a meme that both my mom and my mother-in-law had shared that was the internet equivalent of standing out on your front porch, shaking your fist, and screaming for kids to get off your lawn.  Normally, I’d be able to let that go. But not today. No, I had to let them both know that they were being uncool and were better than that.  That’s right. I mommied the moms.  I actually went back to my comment 4 times, trying to figure out how I could change my response to be more kind and loving.  Couldn’t change it. The voice in my head said, “No. They need to know.”

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The Dark Side is strong with me right now… and I’m not proud of it.

So, I’ve decided that it’s time for me to take some serious time off from Facebook.  If I can’t even be kind to my moms, I have absolutely no prayer of controlling my bitchiness with anybody else.

If I could magic Facebook into the medium I want it to be, I’d only be reading personal status updates that have to do with what’s actually happening in the lives of my family and friends, reading articles about things that make people happy, and watching videos of cute animals — and that’s it. The only way to make that reality happen is to actually contact the people I care about to catch up with them and share my daily awesomeness here. I’m not going to quit doing the things that help me keep good mental health just because I’m not doing them on that platform. And I know it sounds crazy in this day and age… but I’m going to actively check in with people to see how they’re doing… like it’s the 90s or something. Odd as it seems, I actually believe this will strengthen my friendships.

 

awesome1

3 Great Things About Yesterday

  1. Adam had prepared me for him having to stay late at work — but when regular quitting time rolled around, he was actually able to come home.
  2. Getting super frustrated and angry about the rage porn on Facebook helped me to actually willfully ignore it and spend the day doing things other than scrolling and reading articles online. I actually got more chores done yesterday than I had the entire previous week.
  3. Had a good time brainstorming on a game that I might make.

What made YOUR Friday fantastic?

 

Daily Cute


Scottish Fold kitties make my heart go sploosh!

 

Everyday Earbug


Betty Who is my new girl-crush. Berklee alum to boot! 🙂 I’m really lovin’ this track. It’s got a really late 80’s, early 90’s feel to it.

 

Hope y’all are all having a good weekend.

caturday

Make The Most Of Every Day.

Posted in Just Life. by

Nothing throws your worldview into sharp perspective like losing someone you care about.

This morning, one of my friends from college died. He was only 35. He also happened to be the best guitarist I’d ever heard play (in person) in my entire life. And that’s saying something, honestly, because we went to Berklee College of Music and there is no shortage of amazing guitar players there.

Officially, the cause of death was that they couldn’t get his blood to clot… but he was in the hospital in the first place because of health complications caused by alcoholism. He’d struggled with it for years, but the last time we’d talked, he had things under control.

Alcoholism and RRMS are similar in many respects. You have to deal with them for the rest of your life. There are times of remission and there are times of relapse. It’s a rollercoaster you can’t get off or ignore. Alcohol addiction is a disease… it’s not all about choice. It’s actually a neurological disorder, just like MS. Unlike, MS, however, alcoholism will absolutely kill you. Alcohol doesn’t care who you are or what you do. It just poisons you. It just fucking sucks.

Shane’s death especially sucks because of how much inspiration he gave others just by being himself. He was a rock star. Literally. He played guitar on tour for Korn! He had 2 awesome metal bands of his own, Schwarzenator & stOrk that played in Los Angeles, and he taught guitar lessons to folks all over the world using Skype.

I remember meeting him. He was practicing guitar, sitting outside the classroom before ear training. I thought he was way too hot and talented to talk to. Fortunately, he didn’t think I was unapproachable. We even had mutual friends, and it was only the first week of our freshman year. I got to know him, and found out that he was just as big a goof as I am. Actually, goofier at times. 🙂

When I made the switch from percussion to voice, it was Shane who helped me get over nearly crippling stage fright. He didn’t tell me to think about people being naked. He didn’t tell me to stare at a place on the back wall. He didn’t even tell me to pretend that I thought I was awesome. He said (and of course I’m paraphrasing), “Everybody here (Berklee) thinks they suck. That’s why we practice so much. Focus on the music because that’s what it’s about. It’s not about you.”

When I was totally confused in Harmony 4, Shane was the one who explained chord scales to me. I never would have graduated without his help. Heck, aside from ear training and harmony classes that we had together, the guy sat next to me at our college graduation and walked right behind me when we were picking up our degrees. I told him that he should wear pink more often. 🙂 (When you graduate with a degree in music, you get a pink sash to wear.)

8 years after graduation, in what felt like another lifetime entirely, I was lucky enough to spend some time with him again. He helped me learn to play guitar and encouraged me to keep at it, even when I was dealing with the worst part of learning to live with seizure disorder. I remember feeling so embarrassed while I was seizing in his living room. He reminded me that he graduated with a degree in music therapy, and that I wasn’t the first person he’d seen have a seizure. He said that if anything can help me feel more “in control,” it would be practicing.

I feel very lucky to have had him in my life.

Random Message Generator: For The Win

There’s this random message generator on Facebook called “God Wants You To Know.” Occasionally, I click on it for shits and giggles. I do this because I very firmly believe that everyone and everything in creation is God. God is, in my mind, comprised of the totality of existence. Because of that, I find myself smirking at this random message generator, occasionally thinking that maybe it *is* telling me what I need to know at a certain moment.

Today, its message was this:

“[I]t’s time to STOP going through the motions of living, and START living.”

If that wasn’t a bit on-the-nose for today, I don’t know what is. There’s nothing like the death of a friend to remind you both of your own mortality and the importance of living each day to the fullest.

Sometimes, while dealing with MS and seizure disorder, making goals and being creative feels impossible. I think it’s important, though, that we never let ourselves stop dreaming.

Daring to Dream

I know that I try to live every day the best that I can. Sometimes, just existing is a tough gig. But just existing isn’t why we’re here.

My dreams right now are fairly straightforward, and I’m doing my best to achieve those dreams.

I want to be a mother. Been working towards that for a couple of years now. Day after tomorrow, I actually have an appointment with a high-risk pregnancy OB, and I’ve just finished my last pack of birth control pills. The only medication left to stop before conception is Prilosec, and I’m probably gonna stop taking that at the end of the week.

I want to travel. There are places I’ve always wanted to go, and one of the best things that Adam and I made when we were dating was our “world tour” plan. Sure, it’ll take a lifetime to see even half of the places on our list, but I’m game to try. I want to see New Zealand, Australia, Italy, Greece, France, and Japan at some point. I wouldn’t hate spending more time in the tropics either.

I want to be happy with my body. I say this as someone who has felt like she has been at war with her body since elementary school. I go to the gym any day that I’m well enough to do so. I struggle with what’s “right” to eat. I hate looking in the mirror. I feel like a weirdo when I wear makeup, but I feel like I’m supposed to wear it or else I’m not feminine enough. Body issues blow. It’s a genuine dream of mine to one day be happy with my body as it is.

I want to create art of lasting value. I don’t know whether or not this blog counts as art. More often than not, it feels like some sort of confessional. I songwrite from time to time, but I stubbornly refuse to write out the music to any of it. I feel like the computer should be able to “hear” it and make the notation happen. I can’t explain it. It’s a weird bit of resistance that I’ve struggled against since high school. More than that, though, I don’t know if my songs are a real contribution to the world. Maybe my big contribution is a novel. I’ve started and tossed 3 books so far, all of them with about 3 chapters written. Hell, maybe my future kids are the real art project. Whatever the case, I just want to be remembered for something good.

I want to inspire people to live life as well as they possibly can by living my life as well as I can. I want for folks to be able to say that because they knew me, their lives were better. I don’t want to always be complaining about MS. I want to be able to show people that they don’t need to hold themselves back from happiness because of chronic illness.

Those aren’t even close to the dreams I had as a kid. Back then, I wanted to be a rockstar. I wanted my music to magically change the world into a kinder and cooler place. I wanted people to carry my songs in their hearts.

In college, I saw how many incredibly talented musicians had the exact same dream as me… so my dream changed. I learned all about how the music business worked. I wanted to start a business that would revolutionize the music industry. I wanted to promote indie music until it became mainstream. I wanted to be a multi-millionaire and to have enough money to be able to make lasting, positive changes in politics.

When I was in law school, I wanted to be able to protect people who couldn’t protect themselves. I wanted to make it possible for folks who had the talent, drive, and passion to create art to do so without fear of being screwed over. I wanted to enable people to film their movies and record albums.

My dreams nowadays seem banal in comparison. I just really want to be happy and healthy. And I don’t think that’s necessarily a bad thing. I think, instead, maybe it’s a sign of maturity.

Today, I’m just really grateful to still be alive. When I consider how many times I’ve struggled with suicidal ideation, I’m grateful for all of the love and support that kept me going to therapy until I conquered it. I’m grateful to still have the chance to make a positive difference. I’m glad to be living the life I have, and I’m going to keep doing my best to make the most of it.

A Convention Just For Us

Posted in Just Life. by

There are days where I wonder to myself why I ever went to law school.  Today is one of those days.

I woke up after a really excellent dream.  I had put together a convention for my Facebook friends and their Facebook friends only.  It was by invitation only. Everyone had fun playing board games, dice-rolling RPGs, and watching movies and bands.  All of the bands that played at the convention were friends of the group.  Folks like Schwarzenator, Joyce Lee and The Killing Shoes, and Esque.

I got to thinking today, and living that dream is totally plausible.  I have a lot of event coordination experience, and some truly excellent friends.  I bet I could make one hell of a convention/party for about a thousand people or so.  I think it would take at least a year to plan properly. I just need to make a business plan for it, and get some people on board to help with it.

Now, I know what you’re thinking: why not just get your friends to go to a convention that already exists?  I mean, there’s ComicCon, GenCon, DragonCon, AwesomeCon, and so many others that I could go on… and honestly, it’s because I don’t want to do what’s already been done. I’m not looking to do the same thing that’s already out there. I’m looking to get us computer geeks together in a social atmosphere.  I’m not looking for cosplay. (Though with my friends, I wouldn’t rule it out…) I’m not looking for comics. (The books — funny people, however, I *am* interested in!) I’m not trying to force people into playing games with strangers. I’m looking for a party with friends and friends of friends.

One of my friends, Reichart Von Wolfsheild, started BIL – the Southern California counterpart to TED.  He’s a huge inspiration to me. One of the things I can see happening at this convention is inspirational talks by folks like me who have chronic illnesses who are letting people know how they cope with their issues and live their lives to the fullest.

I think I’d also have some people in the entertainment industry, like folks who are involved in TV or who are professional musicians come and talk about what their daily lives are actually like.  Maybe visual artists too.  I’d call the track “Secrets of the Universe.” 🙂  Because that shit needs to be demystified and de-glamorized.

Anyway, I think getting this idea out of my head and into the real world is the best that I can do for myself and for the world today. It’s a step in the right direction.

By all means, let me know what you think – positive or negative. Just don’t be surprised if you’re negative if I don’t listen. 😉